HELP my friend needs tx advice on HER2/neu

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tespi68512
tespi68512 Member Posts: 4
edited June 2014 in Just Diagnosed With a Recurrence or Metastasis
My friend has HER2/neu, which was not diag. until after all of her treatment when the cancer appeared on the surface of breasts.  She has been cut to hell (double mastectomy, and hysterectomy) due to problems related to the surgeries, reconstruction, and preventative measures, which I was opposed to. Then a couple years after all of the surgeries a rash appeared on the breast tissue they saved, but they overlooked the possibility of being cancer.  Finally, some doctor told her that the cancer was HER2/neu, and was never treated for properly in the first place.  She has been on Herceptin for about 2 years, but now it is back. There are so many different doctors with so many different opinions "just like assholes everyone has one" it is really hard to choose what the best treatment is.   I need to help her find people who have been through this, and who can give advice on what really works, not someone we end up hiring and who's influenced by the pharm. companies.  I truly believe hearing from those who their treatment has worked (no matter where in the country) will help her make the right choice.
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  • Brenda_R
    Brenda_R Member Posts: 509
    edited March 2009

    Usually when Herceptin fails, they move on to Tykerb.

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  • cancerkicker
    cancerkicker Member Posts: 99
    edited March 2009

    If I am understanding your message right, she was being treated with Herceptin but she was HER 2 negative? 

    I guess the only thing I can say is that my doctor has told me that sometimes the receptors can change over the course of time (can go from being positive to negative or vice versa).  Apparently, it happens in 25% of cases.

    Best of luck to y our friend!

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  • helena67
    helena67 Member Posts: 357
    edited March 2009

    I think you stay on the Herceptin but they add something else, Tykerb

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  • helena67
    helena67 Member Posts: 357
    edited March 2009

    I hope your friend can go to a comprehensive cancer treatment center. All expertise should be there.

    This is a little excerpt from the NCCN cancer guidelines for breast cancer V1 2009 about patients who recur while on Herceptin (trastuzumab):

    The Panel recommends continuation of HER2 blockade for patients

    with HER2-positive metastatic breast cancer which progresses on firstline

    trastuzumab-containing regimens. This recommendation also

    applies to the relatively new class of patients who are diagnosed with

    HER2-positive metastatic disease following prior exposure to

    trastuzumab in the adjuvant setting. Several recent trials have

    demonstrated benefit of continuation of trastuzumab therapy following

    disease progression on a trastuzumab-containing regimen.The

    regimen of capecitabine plus lapatinib is also an option for patients with

    HER2-positive disease following progression on a trastuzumabcontaining

    regimen.

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  • tespi68512
    tespi68512 Member Posts: 4
    edited March 2009

    she is HER2/neu and estrogen positive.  they are now recomending xeloda or tykerb and xeloda.  She is not sure which tx to go with.

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